Siblings Living With Alzheimer’s Sought

Contact: Amy Gilliam

Photo of Charles D. Smith, M.D. and  Jenny Cox, R.N.
(l-r) Charles D. Smith, M.D. and Jenny Cox, R.N.

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Researchers will create a large bank of genetic material, cell lines, and data from families with multiple members with late-onset AD, which scientists can then use in the quest to discover the risk-factor genes that contribute to late-onset AD, the most common form of the disease. Discovery of risk-factor genes will help illuminate the underlying disease processes of AD, open up novel areas of research, and identify new targets for drug therapy.

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LEXINGTON, Ky. (Feb. 23, 2004) -- The University of Kentucky Sanders-Brown Center on Aging is joining a nationwide effort to identify 1,000 families with two or more siblings with late-life Alzheimer’s disease (AD) to participate in a major research study, the Alzheimer’s Disease Genetics Study. The goal of the study is to speed the search for risk-factor genes that increase the risk of developing AD later in life.

The AD Genetics Study is sponsored by the National Institute on Aging (NIA), part of the National Institutes of Health in the U.S. Department of Health and Human Services, and is supported by the Alzheimer’s Association, the nation’s largest private health organization dedicated to advancing AD research and providing information and support to those affected by the disease. The study will be conducted by NIA-funded AD research centers around the country.

Researchers will create a large bank of genetic material, cell lines, and data from families with multiple members with late-onset AD, which scientists can then use in the quest to discover the risk-factor genes that contribute to late-onset AD, the most common form of the disease. Discovery of risk-factor genes will help illuminate the underlying disease processes of AD, open up novel areas of research, and identify new targets for drug therapy.

“Discovery of risk-factor genes is essential for understanding the causes of late-onset AD and for developing effective treatments and prevention strategies,” said Charles D. Smith, M.D., professor of neurology and director of the Clinical Core of the UK Alzheimer’s Disease Research Center, Sanders-Brown Center on Aging.

“Families who have been affected by this devastating disease understand the urgency of finding the causes of AD, and how to stop it,” he said.

To be eligible to participate in the study, families must have at least three members who can donate blood, including:

  • Two siblings (brothers or sisters) who developed AD after age 60, and
  • Another family member over age 50 who may have memory loss OR a family member over age 60 who does not have any memory loss.

Participation involves a neurological examination or collection of medical records and the donation of a blood sample, which will be made into a cell line (a family of cells grown in the laboratory) that will enable the participant’s DNA to be available to qualified scientists over many years. Medical, demographic, and family history information also will be collected. Unaffected family members also may be asked to participate. The cell lines and DNA will be stored at a centralized repository at Indiana University – the National Cell Repository for AD (NCRAD).

There is no cost for those who join the study. To ensure broad participation, study coordinators will make alternative arrangements for participation if people eligible to take part are not located near a designated study site.

An important part of the study is the confidential treatment of the genetic information collected from participants. Researchers will not be able to identify samples on an individual level. While clinical, demographic and family history information about the participants will be available to researchers, this information will also be free of unique identifiers. Coded data on the blood sample will be stored in a secure computer at the NCRAD. Detailed discussion of informed consent documents will outline for participants how the study will be conducted and how data will be protected at each site and at the cell repository.

To participate in the study, families should contact NCRAD toll-free at (800) 526-2839 or by e-mail at alzstudy@iupui.edu. Information is also available through the study’s Web site or by calling Dr. Smith, or Jenny Cox, R.N., at (859) 257-6508.

About 90 percent of people with AD have the late-onset (also called “late-life”) variety, which strikes people age 65 and older. There is no obvious inheritance pattern with late-onset AD, but researchers have identified one “risk-factor” gene. This discovery has opened up many important avenues to understanding the biological and environmental interactions that may be important to the development of late-onset AD. While scientists have drawn significantly closer to identifying at least four regions of chromosomes where other risk-factor genes might be, researchers have strongly recommended that further collection and analysis of larger sample sets are needed.


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